This post involves a lot of shots, the kind with the needles. I decided to put all of my fertility preservation adventure into one post for two reasons. First of all, I wasn’t sure if everyone would want to read about it, and second of all, it makes more sense as a continuous post, not broken up over three weeks. The first time I met with the fertility team was during my initial inpatient stay. They told me the options, either freezing some of my eggs or cutting out a piece of my ovary which would have some eggs in it. I didn’t need to worry about them until I found out that I needed a transplant and therefore radiation. We met again, and they explained that they don’t really like keeping ovarian tissue from leukemia patients because sometimes leukemia cells can be hiding in it. It sounded painful anyway so we decided that freezing my eggs would be the best bet. On October 14th, I had my first bloodwork and ultrasound. Thankfully, I’m skinny enough that they could see my ovaries with an abdominal ultrasound instead of needing a transvaginal ultrasound, which sounds positively unpleasant. I needed some infectious disease and hormone tests as well, and when I went to the lab, they took five tubes of blood from me. They weren’t the small tubes either! Keep in mind this is a few days before I fainted in the bathroom – blood wasn’t something I really wanted to be giving away at that point. We got a lesson in subcutaneous shots which I needed to get within two inches of my belly button. One type came in a multi-dose pen that had to be adjusted to the correct dose. Another type needed to be reconstituted (another spelling word for my sister), which involved measuring a proper amount of sodium chloride, then putting it in up to six vials of powder to dissolve the medicine. The doctors told me that I might “feel my ovaries” but the shots themselves shouldn’t hurt much since they were just going under my skin instead of into a muscle. I started the shots the next day and I definitely knew what they meant by “feel my ovaries.” Within minutes of receiving my first shot, I had terrible cramps. They only got worse through the evening, eventually bad enough that I couldn’t move. The next day, I tried using a heating pad which helped significantly. For the first few days, I only needed the kind that was already mixed, but after my next ultrasound, they added another medicine. The doctors seemed happy with my progression and I continued getting ultrasounds every few days. I also kept getting bloodwork, and the lab was puzzled by me every single time. Since that lab is a branch of Hopkins, they had my oncology doctor’s orders in the system as well as the fertility doctor’s. After multiple losses of 5 tubes of blood, I finally said something. As it turns out, the fertility doctor only needed one tube. I made sure that I didn’t lose any more blood than necessary after that. I needed the medicine at the same time every day, give or take about 10 minutes. My mom always gave them to me because I had no interest in giving myself shots. Stabbing myself really didn’t appeal to me. One night, my mom was at a friend’s house for dinner, so I drove over around 7:30 and they got a lesson in reconstituting medicine. On the 23rd, the doctors decided to try a transvaginal ultrasound because they really needed a better picture than what they were getting from the abdominal one. It wasn’t as bad as I expected, but it was not “just like a tampon” like they say it would be – tampons don’t hurt. I was supposed to be going inpatient on the 25th, and unfortunately my eggs were not ready to be harvested. I had gotten Lupron, which tricked my body into thinking I was in menopause to protect my ovaries from the chemo, and this was slowing down my responsiveness to the hormones. They decided they’d ask my oncology doctors for another week, but if the chemo was urgent then I’d have to give up. My oncology doctors agreed to give me another week (I love off weeks!) and I was incredibly thankful. I figured they would, because things can generally be moved a few days, but I was really nervous until I got the official news. The next ultrasound was on Wednesday, a yucky, rainy day with lots of traffic. The ultrasound showed that my eggs hadn’t grown at all since Saturday. They told me it’s possible that my chemo in 2004 damaged my eggs and I most likely would have stopped getting periods in a few years. The Lupron could also have been an issue. Either way, the hormones weren’t working, even at the maximum doses, and they didn’t think I should continue. I refused to accept this and asked to try until Saturday. My chemo had already been pushed an entire week, so it seemed silly not to try as much as I could. What were three more shots at this point? As it turns out, useless, but I’m glad I tried. They didn’t see any changes today from last week, so something definitely isn’t right. They have another leukemia patient that is having similar problems, so at least I know I’m not alone. The radiation I’ll be getting in a month has the potential to kill all of my eggs. I don’t know if they’re healthy anyway, since they weren’t responding to the hormones. Either way, the likelihood of me having my own kids is very slim at this point. I cried for hours. When I started writing this post in my head at the beginning of this adventure, it was going to be called “To my future children” and include something about how I hope they appreciate how much effort I went through to have them. The shots and endless ultrasounds and bloodwork weren’t fun- my stomach looks diseased from all the shot marks and my arms are bruised from the blood draws- but I thought they were for a great purpose. Working hard and ending up with no results is one of the absolute worst feelings. I almost didn’t post all this, but I started this blog to give everyone honest updates and this is a pretty major one. On Wednesday, when they first suggested giving up, I was a mess. I cried more about that than my relapse, or radiation, or any other news I’ve gotten lately (and that’s saying something). A relapse is temporary. Radiation will make me feel miserable for a while, but eventually I’ll feel better. This is permanent. I thought of all the people who have told me I’ll be a great mother and cried even more. A little more thinking and some consolation from my best friends helped me realize that without the medicines that caused this problem, I wouldn’t be here today. Compared to dying, this is insignificant. There are lots of alternatives, and in ten years, when I’m finally ready to have kids, there will probably be even more. I can still be a great mother to whatever kids I end up raising. It’s not the end of the world, and although it hasn’t been easy to accept, there’s nothing I can do about it. In the wise words of the Zac Brown Band, “save your strength for things that you can change, forgive the ones you can’t, you gotta let ‘em go.” Special thanks to my best friends for helping me through this week. I’d be lost without you.
6 Comments
Amanda
11/4/2013 12:43:47 am
Love you!!! <3
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Megan Healey
11/4/2013 02:01:28 am
Karen, your strength amazes me
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Marcella Ruland
11/4/2013 02:09:09 pm
Karen,my heart breaks for you. At age 26 I was also told that I couldn't have children. One goes through the grief process for the child that will never be. I also celebrate your strength.You will be a wonderful mother; motherhood is so much more than giving birth.
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dean
11/6/2013 11:57:26 am
Karen, I am very sorry to hear about this difficult news.
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Annabelle
11/9/2013 10:04:19 am
While this is all medically fascinating I'm sorry cuz <3 thanks for putting it all out tho! And yes transvaginal ultrasounds are pretty much the most awkward painful things ever and I'm very glad you didn't need one. Love love love!
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Annabelle
11/9/2013 10:08:07 am
and thats what happens when you dont read the whole post before leaving your comments :) I'm sorry girl they are my least favorite things in the world
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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